Competition Catalyst Grant 2017-18

Application Metrics:  3/6 Applications Funded

Principal Investigator:  Dr. Ann Clarke

Institution:  University of Calgary

Funding Received:  $34,500 Awarded

Project Title:  Enhancing the Working Life of Individuals with SLE while Promoting Public Understanding: an Integrated Knowledge Translation Approach.

Project Lay Summary:  Individuals affected by SLE experience considerable economic challenges. Their escalating and unpredictable health care costs and perpetual struggle to maintain regular employment and care for their families impact self-esteem, career trajectories, and role definitions. These are major and neglected concerns. In our ongoing research, we have used a mixed-methods (quantitative/qualitative) approach to better understand these issues. We surveyed over 1300 patients on their healthcare utilization and lost productivity. We conducted in-depth interviews with patients/patient advocates/physicians to understand how these economic issues affected patients and their families. SLE patients often pursue a less satisfying and financially stable career due to poor public understanding of the disease, limited workplace accommodation, and flawed government/workplace policies. To effect change, we need to look beyond individual or workplace interventions and focus on the systems-level (i.e., institutions, government, policies, and society). We are currently conducting workshops with stakeholders across Canada to identify the priority areas for targeting systems-level action. In our proposed research, we will develop and implement a novel integrated knowledge translation (iKT) initiative that supports the co-production of knowledge between researchers and knowledge users. It will address, for the first time in Canada, systems-level change to enhance the working life of individuals with

SLE and promote public understanding of the disease. We will work with a multi-stakeholder group to leverage the findings from our previous study and, through stakeholder consultations, webinars, and hackathons, develop systems-level interventions. This research will result in stronger stakeholder partnerships, ideas for specific and actionable systems-level interventions to enhance working life, and increased public awareness of SLE.